Seven-year-old Bryn Hitchcock, who suffers from Infantile Batten Disease, will not partake in the wave of grand gestures sweeping the nation to show his mother Rhianon his love this weekend.

He may not be able to give her a hug on Mothering Sunday, but Rhianon, from Wroughton, is looking forward to celebrating being the mum of a loving and extraordinary child.

Ahead of Mother’s Day, in her own words the 42-year-old pays tribute to her special son and Helen & Douglas House, the hospice that has supported her and her family through thick and thin.

I awoke from my dream, it was still dark, I could hear Bryn’s gentle breathing beside me.

I had fallen asleep holding Bryn’s hand to soothe him to sleep. I dreamt that he was having a good day (but a day so good in reality it would be impossible now).

He was running, stumbling, laughing, I took his hand in mine and ran alongside him, like I used to, relishing his joy, drinking in the smile on his face and those achingly familiar twinkling eyes... I had fallen asleep holding Bryn’s hand to soothe him to sleep, I took hold of his hand again but this time to soothe me.

I am mother to a terminally-ill child. He was born apparently healthy and full of life, just like his two older brothers. It has been a heart-breaking and bewildering journey watching him regress. Sometimes, when I hold Bryn in my arms, feeling his weight rest against me, the sound of his gentle breathing, it feels, for a moment at least, that he is just a normal healthy child having a cuddle with his mum and this whole terrible journey, this dreadful disease hasn’t happened.

Bryn accepted no boundaries, he would say hello to, and hug anyone I spoke to, and even though he fell far too often he loved to run and climb. I wore shoes I could run alongside him in to try to prevent him from stumbling but, even so, my handbag was full of tissues and plasters.

From as young as eighteen months we noticed Bryn wasn’t quite developing as his brothers had. His development halted at the age of two and a half before regressing. As his mum I fought for answers, I became an expert on his symptoms.

I spent hours trawling the internet for a probable cause, a cure. I learnt to speak to doctors using medical terms whilst Bryn slowly changed before my eyes. After regularly taking him to appointments for three years he had now developed epilepsy, ataxia, global developmental delay and autistic traits. He was beginning to have problems with his vision and could no longer walk.

Bryn was four and a half when we received the dreadful diagnosis. My beautiful boy had Late Infantile Batten Disease, a terminal brain disease for which there is no treatment or cure. The world fell away from my feet. I had spent years fighting to help my youngest as best I could; now there was no more fighting to be done.

My faith in God, my husband and having my children to care for gave me the strength to carry on, to face what the future was to bring.

We were referred to Helen House, who replaced the ground beneath my feet. They spoke to me as his mother on how to best care for Bryn, they reassured me that I was doing my best for Bryn.

Life as a mum of a child with such specialist needs is very demanding. I have had to learn about feeding tubes, oxygen levels, suction machines. I often need to push back against the world, turn a blind eye to the cruel stares from strangers who do not understand. But being his mum is also extremely rewarding.

Bryn has lost many of his abilities but not the capability to love. He can no longer tell me he loves me or wrap his arms around me in a hug but he oozes so much love. I willingly accept my role as his full time carer, his medical expert. He is my child; I just do what any other parent would under the same circumstances.

We do our very best to continue a normal life. Bryn has two siblings and this is their childhood too. Priorities have changed and quality time together is most important to us now. Bryn is so brave, accepting, loving.

As his mother it should have been me teaching him about the world but he has in fact taught me so very much about life. I grieve for the child he was every day, but this is who he is, who he was, who he will be and I am extremely proud to be his mum.

The facts

  • Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood.
  •  In some cases the early signs are subtle, taking the form of personality and behaviour changes, slow learning, clumsiness, or stumbling.
  •  Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills.
  •  Children become totally disabled and eventually die.

     

    Rainbow Run

  •  Helen & Douglas House cares for terminally ill children, young adults and their families. It relies almost entirely on donations.
  • Rhianon is now urging people across Swindon to sign up to 3K Rainbow Run, which she herself completed last year, and secure vital funds for the hospice.
  • The Rainbow Run will take place in Oxford on Sunday, May 24, High Wycombe on Saturday, June 6 and Reading on Sunday, June 21.
  • To find out more about Helen & Douglas House, the Rainbow Run or to make a donation visit www.helenanddouglas.org.uk. Alternatively email the fundraising team at fundraising@helenanddouglas.org.uk or call 01865 799150.